As we launch our £50,000 Christmas appeal, Stephanie Bell finds out who benefits from your cash.
A diagnosis of cancer affecting a child obviously has a devastating affect on families. It is a trauma that affects around 100 children and young people, along with their parents, every year in Northern Ireland. Treatment can be protracted meaning countless trips to hospital. According to CLIC Sargent, the UK’s leading charity for children and young people with cancer, on average a family here will make a round trip of 95 miles, up to five times a week, while their children are in hospital, putting a huge financial strain on top of the stress.
That is why the Belfast Telegraph, in association with the charity, is launching its Home from Home Christmas Appeal.
We want our readers to help us raise £50,000 towards laying the foundations for two Homes from Home, sited near the Royal Belfast Hospital for Sick Children and Belfast City Hospital, where families can stay while their children are undergoing treatment. It is hoped the homes — the first in the province — will open in 2014 at a total cost of £3.7m.
As we launch the appeal today we tell the story of one young girl’s successful battle against a rare form of childhood cancer and talk to CLIC Sargent’s patrons in Northern Ireland, boxer Barry McGuigan and his wife Sandra, whose daughter beat childhood leukemia.
Honour Johnston showed courage beyond her years when faced with the trauma of a cancer diagnosis last September. Now just as the 13-year-old is trying to get her life back to normal after a traumatic year battling a rare form of the disease, she has to be brave once more in another cruel fight which she should never have had to face.
In an inconceivably heartless vendetta, bullies are using Honour’s illness to victimise her. In a vicious campaign, both online and in school, they’ve taunted her about losing her hair and even tried to pull her wig off. In one of the most sickening attacks, one tormentor posted on Facebook that they hoped her cancer would come back and kill her.
But as determined as these faceless cowards are to make her life hell, Honour is even more determined they won’t win. Which is why she’s happy for her mum Rachel to share her story in support of the CLIC Sargent appeal.
Rachel is devastated that her daughter has had to deal with such cruelty.
She says: “This child has been through enough. Do people not have a heart? Why do people want to kick you when you are down? Thankfully most people have been wonderfully supportive. These are random people who want to be nasty. Honour tries to ignore it but she’s suffering anxiety from the after-effects of her treatment and doesn’t need this.”
The past year has been gruelling for Honour, but her mum says that her remarkable strength in accepting the illness has helped get her family through the nightmare. Just over 12 months ago Rachel’s world came crashing down after Honour, who was just 12, was diagnosed with an extremely rare form of childhood ovarian cancer.
Honour had never been sick a day in her life and when she came home from school complaining of a sore stomach on her first week back last September. At first Rachel wasn’t overly concerned. Within just a week, though, the unthinkable had happened.
After taking Honour to her GP, who referred her immediately to A&E, arrangements were being made for emergency surgery to remove a tumour the size of a football from the child’s right ovary.
The terrible fear which Rachel felt, from the moment of her daughter’s diagnosis until she was given the all clear this summer, was so intense that most of the past year is now just a blur. She says: “It was horrendous. You just don’t ever imagine your child is going to get cancer. I kept thinking ‘My daughter is a cancer patient’. She had lovely long dark hair which she was always putting clips and bows in — she’s a real girly girl — and all I could think was that she was going to be bald.
“Nothing actually seemed real. There are bits of the last year I find hard to remember. My mind went into automatic pilot. It was my way of coping and I just seemed to be going through the motions. I lived on Valium and lost two stones in weight with worry.”
Rachel (38), who lives in Millisle, also has two boys Abraham (11) and Elliot (4). A single mum, she gave up her job as a presenter with Downtown and Cool FM to care for Honour. The financial burden which came with leaving work plus the extra costs involved in travelling to and from hospital were greatly relieved at a time of huge stress by CLIC Sargent.
Rachel recalls the shock of that first week when her daughter was brought into hospital for emergency surgery: “I was told it was a high-risk operation and would last around seven hours. The consultant said if anything went wrong he’d come to see me immediately. When he walked into the room after three hours I thought the worst and I passed out on the floor. When I came round I just vomited with nerves.
“The operation was a success, although they had to remove Honour’s right ovary. We then had to wait on biopsy results. The strange thing was that there was no sign of a tumour. You would have thought with it being the size of a football that her tummy would have been distended but it wasn’t.”
The wait for biopsy results was so frightening that Rachel asked the hospital to first inform her dad as she wasn’t sure how she’d cope with the news. When her dad called at her home a week later she knew instantly by the expression on his face that the news was not what she wanted to hear.
“I could tell he was scared to tell me and was in shock himself. I went straight to the phone and rang the consultant. He was very reassuring and said he was very confident that he could fix it. He said it was an extraordinarily rare form of cancer in a child, but very treatable as it hadn’t spread. He said she’d need chemo ... after that everything became a blur and I fainted.”
Rachel then had to break the news to her daughter. She told Honour that she had a cancer but reassured her they could make her better. Even then, and right through the months of exhausting treatment that lay ahead, Honour accepted what was happening with a remarkable maturity.
Rachel says: “She made it easy for me. Had she broken down or said she was scared it would have been a lot harder, but she simply accepted it and never complained. Even when we’d to take her to hospital for tests to start treatment, she felt for the other kids there who were sicker than her.
“She even told me how lucky she was that her cancer was treatable. She has a great sense of humour and when she lost her hair she made fun of herself and just turned it into a joke. She was amazing and lifted our spirits and helped everybody around her.
“She was so positive she made the rest of us positive. She was such a wee inspiration.”
Honour had to undergo seven cycles of chemo over several months which left her so tired she spent most of her time in bed. Danger of infection meant she was isolated for most of the past year from friends and even family members.
Being at home, Rachel faced rising costs with extra heating bills. The treatment made Honour’s weight balloon so that she needed a whole new wardrobe of clothes. Her appetite changed and groceries became more expensive.
On top of worrying about her daughter, Rachel faced added stress with extra bills while living on benefits. However, the burden was greatly relieved with grants from CLIC Sargent.
Rachel says: “There isn’t much support from government. The only help I’ve received has been from organisations like CLIC Sargent. There were things that people wouldn’t think about. Due to Honour’s treatment she had a line in her chest. This meant we had to buy a whole new wardrobe for her so that her line was easily accessible. She also needed to buy head scarves as her hair fell out. All of this stuff adds up.
“Our food shopping bill trebled as Honour was craving lots of different foods due to her steroid treatment. Other unexpected bills included a rising heating bill with all of us in the house on days when we would normally be at work or at school.
“It’s good to know that CLIC Sargent is there and that we have options for help. They were also a great support at times when I was in a complete panic and things would be totally out of perspective.
“I’d ring Bridget, my CLIC Sargent social worker, to talk about the reality of what I was facing. This was very calming and reassuring. It can do wonders just to have someone to listen to you.”
Having spent most of the past year travelling to and from the Royal Victoria Hospital from Millisle, Rachel knows what a lifeline it would have been to her family to have had the use of a home at the hospital.
She says: “If there’d been a Home from Home we probably would have relocated to Belfast. Just to be close to the hospital would have been so reassuring. The fear of being so far away is something which you don’t expect, but it really adds to the stress.
“Sitting for hours in a hospital also adds to the anxiety. To go to a Home from Home and sit in a comfortable, homely environment would have been great. Your other children really suffer when you have a child who is sick. The Home from Home would have meant we could have been together more and I could have cooked dinner for the boys and enjoyed quality family time with them.”
Rachel adds: “I know people have been very generous, but I would urge them to dig deep and support this appeal. Northern Ireland is the only place in the UK that doesn’t offer this service to families and no one knows when they may need it.”
Ex-boxing champ on daughter’s big fight
CLIC Sargent patrons Barry and Sandra McGuigan on how their girl’s leukemia battle impacted on the whole family
By Helen Carson
Former boxing champion Barry McGuigan says his daughter’s battle with leukemia was the toughest fight of his life. His now 25-year-old daughter was diagnosed when she was just 11, in what was a devastating piece of news for the family.
Barry (51) and his wife Sandra, who have four grown-up children, three sons (aged 29, 24 and 22) and one daughter, are patrons of CLIC Sargent in Northern Ireland.
Now, thankfully, their daughter — we have been asked not to use her name — is well, having recovered following treatment, and is busy pursuing a successful acting career.
Barry explains how he felt when his daughter was diagnosed: “People may think that I am strong because I was a boxer, but I’m no stronger than anyone else. Just because I was involved in a sport that is probably the most physically demanding of all sports and I did have to have a lot of self-assurance didn’t make it any easier. It didn’t give me any extra strength. This was completely outside of that.
“When you’re talking about your baby, your only girl, it is different. As parents we may appear outwardly confident, but inside we feel afraid. When something happens to your child, it is awful. You feel helpless. When I went into the ring anything could happen, but I knew how constant I was and that I could control things to a certain extent.”
Now the McGuigans are backing CLIC Sargent’s Homes from Home campaign. “It is imperative for families to have a Home From Home and Northern Ireland should have one too.”
He explains this facility allows children who are ill to be with their siblings: “It creates a type of normality for the child who is sick. It is terrifying for a child to be diagnosed with cancer and they are intimidated by all the things they have to through, like hospital appointments.”
And the sad reality for many families is that a diagnosis and subsequent treatment costs a lot of money in terms of travel expenses and days off work.
“Cancer can affect any of us, it doesn’t matter how much money you have,” says Barry. “Very often families can’t afford to travel all over the country. And while friends and family do help, they can’t do that continually as they have to work. Having these homes is a Godsend to families. You don’t have to pay, but if you want to donate anything from 2p to £20, or £200 if you can afford it.”
Barry’s wife Sandra says she was totally “devastated” when she was told of her daughter’s illness: “When we went to the hospital we did so as a family as it affected us all. We were warned that she would be in an oncology ward, not a children’s ward.” She adds that her mother’s instinct told her something was wrong: “As a mother you know when your child is ill. When they fall over and cut themselves you know they are ok, but this was different.”
And while continuous hospital visits and chemo took their toll, Sandra says: “Our daughter got on with this like it was a job of work. She gave us all the strength to get through it. She said to me the thing that was hardest to deal with was the lack of normality in her life. That is why it is so important to have the Home from Homes. Families can have a meal together. There is a laundry room — there is something therapeutic about doing everyday things.”
And it was the McGuigans’ desire for normality that meant they celebrated Christmas and New Year at the hospital ward.
“The children had tinsel wrapped round their drips and wore luminous wigs and all the parents and staff joined in. There was one family who were just at the early stages of treatment who were quite angry at this. They said ‘What is there to celebrate?’ But the children wanted to be normal, they didn’t want anyone to tell them ‘You’re sick, so you’re exempt’.”
Sandra says her own protective instincts meant she wanted to keep her daughter home from school when she was ill: “I wanted her to be with me and be safe, but, of course, that wouldn’t have done her any good either.”
Sandra and Barry say families can often crumble under the strain when cancer hits their child.
Barry adds: “We know that 40% of families break up under the strain and this has a devastating effect on the child, too, who feels responsible.
“It is a paradox, but you have to be positive. I remember the doctor saying to us at the time ‘When she looks at you, you have to look back at your child like she is going to get better’.”